Road to a Cure Pedal for PSC

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Proactive Waiting

PSC Partners Seeking a Cure

Proactive Waiting

While you wait for the call that a liver is available it is important to follow the instructions given by the center to care for your health, and to keep yourself as involved, informed and prepared about the process as possible.

Keep healthy as possible

While you wait for the call that a liver is available it is important to follow the instructions given by the center to care for your health. You need to be in as good health as possible prior to surgery. Of course you will have already given up smoking and alcohol. Exercising appropriate to your condition, watching your diet, taking the meds prescribed are critical and should be your focus while you wait. Take care of your routine check-ups, immunizations, and tests, as well, including dental work. After surgery dental procedures and other minor procedures may become a bit more complicated.

Know how to get in touch with your transplant coordinator and hepatologist. Know the physical signs that require a call or even hospitalization.

Keep your insurance

Keep your insurance current. The social worker at the transplant center and the center’s business office can explain the importance of understanding what your policy covers, including pre-existing conditions. But it is your responsibility to know what you can expect in terms of coverage. If you lose your insurance it is important to keep the center informed and to work with them as you re-obtain coverage. There are resources for patients in that situation. Click here for resources about insurance coverage. You may need to plan for additional expenses related to surgery, such as medication coverage, travel expenses for yourself and caregivers, and some comfort items.

Stay educated

While you wait, continue your education on transplant, attend meetings for patients, and prepare yourself mentally. Talk to liver recipients; find a mentor. A determined spirit and the will to make it through do matter. Try to keep in touch with friends. You may not be able to do everything you once could, but it is important to keep some normalcy in your life.

Keep your blood tests current

It is critically important to stay current with your blood tests. At low MELD and PELD levels you will need blood tests less frequently, but as the score rises, you will be told to get them on a more rigorous schedule. If the results are not updated on schedule your MELD or PELD score will be lowered to a default number until you get the tests and they are reported to UNOS.

Keep caregiving team involved

Let your caregiver in on your thoughts and how you are doing. Ask for help when you need it.